Flashlight

(NOTE: Based on time elapsed since the posting of this entry, the BS-o-meter calculates this is 6.03% likely to be something that Ferrett now regrets.)

The most merciful thing in the world, Lovecraft once said, is the inability of the human mind to correlate all of its contents. As for me, I say we are looking into a great void, swinging the thin beam of a flashlight across the surface of something vast and unfathomable, a thing whose shape we cannot retain in our minds; it is too big. It is too terrifying. And were we somehow to contain the entirety of that thought within ourselves, some critical illusion we call humanity would shatter into pieces.
Like this five-year-old girl with brain cancer.

“I want to try your fruit punch,” Rebecca says, unapologetically curious as always. She’s always had a taste for sweet things, chewing gumballs until her baby teeth started to turn clear. And she’s always been direct, rarely rude, but punching a straight line to whatever she desires. It’s part of her charm.
“Can’t have it, kid,” you say, sipping the spiked punch. “This is a grown-up drink.”
And you realize: Rebecca might never have alcohol. She may die before she gets old enough to sneak a drink in some teenaged party. She may never be a teenager. She may never be ten, she may never be six.
Her birthday is two months away.
This mouthful of rum is a locked door that she will never open, a single room in a vast mansion. You go exploring, sweeping the flashlight across all of these other rooms full of dusty furniture with tarps thrown over them, waiting for her to find them. She’ll never have a drink. She’ll never go to college. She’ll never have a job. She’ll never fall in love.
You realize that a child is not a child, but an arc soaring out into time and space, a potential to be fulfilled, and somewhere within her skull is an eyeball-sized mass that may grow to squeeze her brain until it literally forgets how to breathe. Except this child is a child. This child may only ever be a child, and then dissolve into a tangle of theories. What would she have liked? What would she have seen?
You look down at this beautiful wide-eyed girl, grinning like she has all the secrets in the world to tell you, and you can’t hold it all in your head. She’s alive here, and over here she may not be. You swing your flashlight between those two possibilities, trying to capture them both, but the beam is too narrow. Alive. Dead. Alive. Dead.
You hold her so hard, pressing her skin to yours, hoping to press her memory into your flesh forever.
But you can’t.
You know you can’t.
She’s wrestling with you, shoving a fuzzy stuffed octopus into your face, straddling your chest. “I’ve won!” she cries, exultant in triumph. “You are defeated!”
A girl like that can’t be sick. She can’t. Then the flashlight sweeps back in time to illuminate her mother’s words in the hospital:Kids with brain tumors often look fine. Right up until they aren’t.
We built those rooms for her. We think they’re ready.
The flashlight sweeps across that door, and passes into the void.
You hide the octopus in a game of hide-and-seek. You rest it on the water pipes hanging above the basement playroom, and after counting to twenty-eight – nobody’s quite sure why she stops there, but it makes sense to her – Rebecca comes looking for it. “Is it in here?” she asks repeatedly, checking the cabinets, under the couch, behind the pillows. You assure her it is, as she looks around, face scrunching up in confusion.
Eventually, she thinks to look up. Her face is illuminated with a glorious learning, as she sees Mr. Octopus’s stuffed tentacles hanging down and learns a valuable lesson: things can be hidden above her.
But is it a valuable lesson if she’ll never put it to use?
Where will all of those teachings go, if she does?
Supporting a child with cancer is like being coal, crushed under a mountain of pressure. You have nowhere to go. You’re shoved against the hard edge of this little girl’s need, contorted into hideous shapes, conforming to the shape of necessity.
But what will happen to you once she vanishes, and there’s nothing left to hold you up?
There are no answers. We have no certainty. She could be around for years, or weeks. The flashlight bobs between all of these horrors and glories – the way she curls up in her mother’s arms, the grainy horrors of MRI snapshots, the wondering if her twitching eye is the result of some tumor, the statistics of grade 3 astrocytoma survival, the success stories from those kids who beat the odds, the wonder of clinical trials. Every day we oscillate between a thousand potential futures, so many of them terrible beyond envisioning, a handful of happy endings, and all this vibrating between quantum states is exhausting.
And yet the future coalesces but one hour at a time.
You can’t see it all at once. Little emotions, flickering and dashing, too large to capture inside your skull. There are times you scream from the horror of it. There are times you ball your fists from the helplessness. There are times when that all dissolves and you are given the solace of a minute where she’s a little girl slapping cards onto a pillow. There are times you ride the hope before crashing into depression, and there are times you catch a glimpse of life without Rebecca and oh God you cannot function. It’s all seen through a narrow tunnel.
I look into the eyes of my beautiful goddaughter, and I cannot see death. Then I can. And when I see death I cannot see her, and when I see her I cannot see death and oh God I am so small and there is nothing I can do but hold her hand and hope for miracles.
She may be dying. And as she dies, we do. The truth is that the flashlight saves us. If we were to see all of the monster lurking in that void we would die, are dying, and it’s only our inability to fathom the whole horror of this that allows us to function. What’s happening to her is something alien to the human mindset, to the idea of life itself, that quiet promise that we grow. She might not. She might have experienced just about everything she’s going to. She might be gone.
Rebecca is a miracle. Even if this was all we got, she is a fucking miracle, and I want you to know that.
I just want more.
I want so much more.

11 Comments

Leslie

Mar 24, 2014

Ferrett, your writing is exquisite. I am so sorry anyone has to endure such a tragic, horrible situation. I lost my 5-year-old niece in a drowning some years ago. She was in a backyard swimming pool with her brother and other children when she went under without anyone, including the parent watching, seeing her. By the time she was missed, it was too late.
The pain of her loss is like nothing else I’ve ever experienced, and, knowing this, my words here seem small. I wanted you to know that you are heard, and I am thinking of Rebecca and hoping for the best.

When Matt’s (and mine) little nephew drowned last month, I was prettymuch right there. Stricken to the core with all the things he was never going to do, all the things I was never going to do with him.
It was extra hard for us, he was just our daughter’s age. So the inevitable connection was made and I look at everything differently now.
I don’t like living in the world where X is gone, but here I am. And I was a wreck at the services, telling his dad, “I know how hard I’d wish for B to be okay, that this was all some huge mistake, and I’m wishing that for you right now.”
We aren’t supposed to bury our children.
I don’t know if it’s harder knowing the end is coming and get to prepare, get to cross off a little bucket list of wishes but also knowing that every day draws you closer to the inevitable… or to have them there, smiling and joyful one day, then just…gone. Gone so fast you never got the chance to say goodbye.
My heart goes out to you guys, all of you in her family.
I unfortunately know the pain you’re looking at, that kid-shaped hole that is about to be torn from your life.
I wish you strength and peace and so much love. And know that our thoughts and prayers are with you all.

As the parent of an almost 20 year old cancer survivor you got this spot on perfect. Every milestone my kid has hit since his diagnosis 6 years ago is a cause for celebration. In my head I am just checking shit off with a kind of goofy, anxiety ridden euphoria. I just want my kid to LIVE!!!
Thank you for this.

ahh fuck, that hurts to read… I feel so hard for you and people going through this, I know it’s not a lot and i’m very far away but i hit up my national cancer research charity with a small donation in Rebecca’s name. She, through your words, is touching people and I hope, really hope, for a positive outcome not just for her but for all the children who should not have to fucking deal with this shit.

And after the storm,
I run and run as the rains come
And I look up, I look up,
on my knees and out of luck,
I look up.
Night has always pushed up day
You must know life to see decay
But I won’t rot, I won’t rot
Not this mind and not this heart,
I won’t rot.
And I took you by the hand
And we stood tall,
And remembered our own land,
What we lived for.
And there will come a time, you’ll see, with no more tears.
And love will not break your heart, but dismiss your fears.
Get over your hill and see what you find there,
With grace in your heart and flowers in your hair.
And now I cling to what I knew
I saw exactly what was true
But oh no more.
That’s why I hold,
That’s why I hold with all I have.
That’s why I hold.
And I won’t die alone and be left there.
Well I guess I’ll just go home,
Oh God knows where.
Because death is just so full and man so small.
Well I’m scared of what’s behind and what’s before.
And there will come a time, you’ll see, with no more tears.
And love will not break your heart, but dismiss your fears.
Get over your hill and see what you find there,
With grace in your heart and flowers in your hair.
And there will come a time, you’ll see, with no more tears.
And love will not break your heart, but dismiss your fears.
Get over your hill and see what you find there,
With grace in your heart and flowers in your hair.
[Mumford & Sons – After the Storm]